Saturday, 30 July 2016

Bleak

In 2012 I started this blog and in doing so I had made the decision to share my journey through chronic illness with whoever came across it I the Internet. 

So I will share all of it with you; the good the bad and the ugly.

Yesterday was hard. It was perhaps only the 3rd time in almost 6 years that I have thrown in the towel. I'm not even sure you can throw in the towel when you're chronically ill. There is no escape. 

But I think I meant that I would give up the tablets. Give up the rehabilitation. Stay in bed all day through choice rather than necessity. I wondered what the point was; what was the point in prescriptions that only alleviate certain symptoms a tiny bit. What was the point of getting up when I had nothing to do and nothing I was able to do without suffering for it... 

I went back to bed to rest because I felt poorly and then suddenly I couldn't help but wonder what the point of my life was. I closed my eyes to try to sleep - something I have not allowed myself to do for years after working tirelessly to correct my broken sleep cycle. Even if I'm hit by nights of insomnia I don't catch up on sleep the next day. Waking up after sleeping in the day makes me feel very, very ill. But yesterday I didn't care. So what if I slept during the day and undid all that work? So what if I woke up feeling worse? I could just go right back to sleep again because I had no reason to get up. 

I cried a lot yesterday. Properly cried. My soul felt broken somehow, as if the years of finding the good in such a bad situation had taken its toll. I was done. I wanted to run away from it all - give those closest to me a happier life by not having to look after me anymore. I shut down on myself. Completely. I didn't want to talk to anyone, didn't want to ask for help, didn't want to see anyone. 

But there is something within me that won't let me completely give up. It's as if my auto pilot function is set to remain hopeful and strong and calm.

I didn't sleep - I couldn't shake the knowledge that I'd be so disappointed in myself if I did. So I got back up when I was physically able to. I had a shower. I washed my hair. I put on clean pyjamas. 

I find my own positivity and outlook infuriating sometimes. I just cannot seem to give up on myself. Even on those three, rare days when I have wanted to give up I have somehow managed to cling on. For that I am incredibly lucky. 

It is only natural that a person in my situation should have days like yesterday. How I don't have them more often is beyond me. 

And yet I have to do it all again today. And then tomorrow. And then the next day. 

Wednesday, 27 July 2016

Weigh Day Wednesdays

I am now 3 whole stone heavier than I was when my M.E. journey began in September 2010. Today that fact makes me miserable. Everything wobbles. Nothing is toned. My thighs and bum are covered in cellulite and have lost the shape they once had. I repulse myself if I'm being truly honest. I feel disgusting. 

Okay so I was lazy at uni and put on a bit of weight. Ironically it was joining the gym that seemed to be the final nail in the coffin for my apparently exhausted body and within a two weeks of starting my membership, my M.E. journey had begun. 

When you have few pleasures in life, chocolate and treats can be hard to give up. But I have cut down on them so much. Yet still the weight piles on. If I am fending for myself I do not have the energy (or the skill) to create healthy meals. Instead I can do frozen pizza, fish fingers, microwaveable ready meals. All dependent on if I'm strong enough to open the oven/microwave door. Toast is simpler and easier. 

Frozen peas are the only vegetable I can regularly eat. Broccoli upsets my stomach. Fruit can make me feel poorly. One day I can eat it okay and then another it causes pain and upsets my digestive system. In spite of my unruly digestive system I eat well. 

I have lost my jawline and my waist. The only area that hasn't gained anything is the area that needs it most! My boobs. 

My stomach looks like an upside down bowl has been placed under my ribs. I can't see my feet when I look down and I am surprised that no-one has asked if I'm pregnant. I'm not. 

I am embarrassed to show any skin above my knees and I cover my arms with a cardigan even in sweltering heat.  

It's the lumps and bumps that get me, not the number staring back at me when I stand on the scales. At the time of writing this I am 14 stone and 4 pounds. I am 5'7 so I feel 'big' already.

I don't want "insightful" comments about how they're just numbers and the right clothes size is the one that fits. I feel fat. I miss exercise - and by that I even mean just simply being able to wander and walk around more.


So I have started my own little Weigh Day Wednesdays in the hope of keeping track of things. I have my little weight loss pom poms - each one representing 1 pound. 

If nothing else watching what I eat is giving me something to do ha ha! 


Monday, 11 July 2016

The Adventures of Anna Jones - One Happy Camper!

To say you are going camping when you're not very well is probably a tad ridiculous. For someone who's internal thermostat is most definitely broken to decide that sleeping outside in a tent with nothing but a sleeping bag to keep them warm seems rather silly. Add to that the fact that light and sound can and do induce pain, malaise and nausea, well it just doesn't sound like a good idea at all does it?

Yet I did it anyway! 

My parents and Mr Tree Surgeon took me up to East Yorkshire for the weekend in the hope that we might spot some nesting sea birds in the cliffs at Bempton. 

Slightly larger than your average two man tent...

You may already know that car journeys are tricky for me, as they are for so many M.E. sufferers. It isn't just travel sickness that we have to contend with. The stuffy car, the upright seats, the struggle to process the images that blur past the car window, the being unable to have your legs up to avoid feeling faint, the unexpected delays if you hit traffic... It don't think I'll ever be able to accurately convey how it feels for me. And yet sometimes I manage just fine! Truth be told I haven't even considered the journey; I was concentrating solely on the staying in a tent bit! 

After two and half hours in the car we all arrived at the camp site safe and sound. I perched myself on my mobility scooter and watched as the tents were put and secured. I elected myself Chief of Guy Ropes and shuffled my way around securing them into the ground. As strength is not my forte anymore Mr Tree Surgeon did have to follow me round double checking my work.

Even when you can't walk far, you must at least
look the part and wear walking shoes!
Home for the weekend

We were camping with family friends and they were kind enough to lend me one of their fishing bed chairs because the consensus was that my poorly self would not manage a wink of sleep if I was laying on the cold ground with just a roll mat or two for comfort. This bed chair was SO comfy and both nights I slept incredibly well in my shiny new all-purpose sleeping bag. Mr Tree Surgeon was happy enough to slum it on the floor next to me. 

Ominous grey clouds but we avoided the worst of the weather

For some reason it hadn't entered my mind that there might be other campers around. I had it in my head that we could pitch up wherever we liked and even I would be able to walk the short distance to the toilets and shower block. Bless me! In actual fact it was jam-packed and I had to use the car each time I needed a wee. I didn't care what the other campers might think of this until the last morning when, struggling to walk after just waking up, I shuffled from the car to the toilet only for one woman to openly laugh at me right in my face. I wasn't awake enough to explain myself and had to settle for her assuming I was lazy and/or drunk at 8 o'clock in the morning. 

Poorly person essentials
The mobility scooter paid for itself over the course of the weekend. For the first time in almost six years I didn't have to stay behind while everyone went off for a walk. I managed to scoot across bumpy fields right up to the coastal path that allowed you to get the best view of the nesting birds. Everyone helped me clamber over the style and then Mr Walking Stick and I joined everyone for a 'short' walk, flanked on all sides in case I took a tumble and fell off the cliff!!! 

PUFFINS!
My poorly, exhausted legs got me maybe
200 metres along this path to see the birds

I obviously didn't manage all of the walk but it was undoubtedly the longest, loveliest walk I've had in years and years. Everyone was over the moon for me! Not only had I managed to sleep in a tent, I had been able to come along and get some fresh air and stretch my legs. For my parents to see that... It really hit home when my dad commented on how not so long ago I had been unable to walk to the toilet from my dining room bed. What a difference a few years have made. 

Fluffy chicks!
Mr Tree Surgeon and I then mobility scooted back to the car and he drove me round to meet the others at the end of their walk at the RSPB Bempton visitors centre. We had a scoot around there too and I may have had a little happy cry when I looked back to see how far the scooter had allowed me to get. Never would I have managed such a walk. 

RSPB Bempton Cliffs

When it was time to go home Mr Tree Surgeon and I attempted to set down our tent by ourselves, as a practice run for when/if we ever go camping by ourselves. I did it - with a rest in the middle and him doing the hard bits! So it's looking good for future camping adventures. Another thing I never, ever dreamed I'd be able to do again.